Post Tubal Ligation Syndrome is Real!

This blog is about post tubal ligation syndrome, its side effects, and how tubal reversal helped to relieve my symptoms of PTLS. It is also about my life after tubal reversal, and how I feel about the second chance I've been given......

Monday, April 30, 2012

It appears that many of my "clipped" girlfriends are experiencing pain and looking for something to print out to take to their docs. I know it's hard for docs to believe unless they see it in print, so here are a few for you to look over.

Tubal clips for female sterilization account for about 10 to 40% of the contraceptive methods used throughout the world. Clip migration is an unusual complication which may lead to chronic unexplained abdominal pain. We report here the case of a 44-year-old woman who suffered from chronic abdominal pain. The diagnosis of intraperitoneal migration of the Filshie clip fixed five years earlier was made. Cure was achieved with ablation of the clip. Late complications of Filshie clips are uncommon and non-specific. They include tubal necrosis and section, sterilization failure (0.7%), and migration (0.6%). Rare migrations into the bladder, the peritoneum, the appendix, or the vagina have been reported. When investigating chronic abdominal pain in a female patient, the clinician should inquire about sterilization history and carefully examine plain x-rays of the abdomen in women with tubal clips.PMID: 12193864 [PubMed - indexed for MEDLINE]

EDITORIAL COMMENT": We accepted this case for publication since it seems to demonstrate conclusively that a clip on the Fallopian tube can produce persistent pain without associated pathology such as infection, adhesions or damage to other organs. Why then is this complication so rare? Why was the postoperative pain unilateral in this woman? Can readers provide the answer to this riddle? One of the reviewers made the comment that this complication is not rare only under-reported and that he has heard a number of anecdotal reports of cases where Filshie clips have been removed and the patient's pain has resolved. This comment from the reviewer is of course anecdotal.http://onlinelibrary.wiley.com/doi/10.1111/j.1479-828X.1997.tb02265.x/abstract

Here's the deal...You go to google scholar and you look up filshie clips, pain with filshie clips, complications with filshie clips, etc. Some you will be allowed to view the whole article, some just the summary. If it is really an article that interests you, it may be worth it to pay for it, somewhere between $4 and $20 bucks. Most of the time the summary, or abstract will tell you all you need to know.

I hope this helps girls. Be strong. Be your own best advocate. If you want the clips out, demand them out. If you want to be whole and functioning, then find a doctor for reversal. Don't let others tell you that you are crazy, or that it is all in your head. Do what's best for you!

Wednesday, March 21, 2012

I know it's been a long time since I posted. I just couldn't do it because so many things were happening in my life. Good things. Things that required my full and complete attention. I had no energy to look to the past, or to mistakes, or to talk of things that made me remember sadness or grief.

There seemed to be a change in my atmosphere, one of understanding, where myself and my husband became more in tune with each other's needs. It's so hard to explain the energy that went on in our household in the fall of 2011, but it was loving, peaceful and all things good. We came together, the two of us, both knowing, and even hoping for another chance at creating life. And Thanksgiving morning when my planned monthly visitor didn't show, I tested and found that I was once again pregnant. When I told my husband the news, he said simply, "I've been waiting for you to tell me. I've known all month this was coming." He kissed me, and smiled broadly in a way that let me know that this time, things would be different. We were cautiously optimistic about all of it. So, I simply dropped writing, or thinking for that matter. We both just hoped and prayed. It's funny how I felt the need to coo coon myself at this time, and even hubby seemed extra careful to shield me from the rest of the world, as if that would somehow protect the new life growing within. I had many early ultrasounds that didn't prove to be hopeful, but we finally had one that showed the shape of our little one. Doctors didn't have much faith in my ability to carry this child at the ripe old age of 41, but I insulated myself from their remarks, and through faith and grace continued to carry my little one.

Here is the 13 week scan:

Look at the tiny features already apparent. Nothing short of miraculous in my book.

Now, I as I am typing this I am 21wks pregnant. I have had the big anatomy scan, and all looked well. My heart is overjoyed with love for my child, and for my husband who somehow understood, well, everything.

Here is the latest ultrasound:

Kind of a grainy profile, but beautiful in my book. We had a hard time seeing the gender, but it was thought to be a girl. We don't care either way.

God is definitely good and gives us our hearts desire. So, pregnancy can happen again in us old gals with a tubal reversal! I'm proof. Blessings to you all, I have mine right here inside of me. :)

Tuesday, September 6, 2011

Wow, a whole month has gone by and I haven't posted anything. Where did the time go? I know exactly where it went. It was wasted away beating myself up over things that I have done, and failed to do. The miscarriage really did a number on my brain, I must admit.

While I would have sworn to you that my life was just fine the way it was, having conceived again makes me question if that's true. On one hand, I was so amazed at having a positive pregnancy test. I was in shock and awe that my surgery didn't just relieve my pain, but also allowed me to be open to new life again. As time went by, it really hit me that I WAS PREGNANT. It made the whole grief over having the tubal start to fade away. I felt joyous. Cautious, but exhilarated. My husband was in shock. I'm not sure he believed I would be able to get pregnant again. I really think he was afraid. After all, I had just had surgery three months before, and he was now considering that another pregnancy would result in another csection, and last time didn't go so well.

And then came the loss. The loss was a sadness for both of us, but the aftermath was the complete opposite for each of us. He felt as if it was meant to be. I felt as if it was all my fault for having the tubal. He felt relieved that now he didn't have to worry about his wife having another surgery. He didn't have to worry about something happening to me and having to raise four kids alone. He felt like we could go back to life as it was. I felt that life would never be the same. I conceived. I saw my baby on the monitor. I saw a heartbeat. It was a new life, that in my mind was supposed to be with us. And it was gone. Just like that, here and gone. I was grateful it happened early. But angered that I didn't have more time with my baby. Mostly, I was angry with myself. I felt as if my past actions caused this. I not only damaged my body, but I had damaged my baby's chance at life.

My hubby does not want to try again. I wish we would. Just one last time. I have some sense of hope. We are NFP as birth control, and my hubby is not keeping track. I won't lie to him if he asks where I am in my cycle, but at the same time, I'm not reminding him either. I know that's bad, but I want to be fully open to new life if that is in God's plan for me. I also don't want to make the love of my life unhappy, nor do I want to take away time and energy from my living children. So, it makes me just one big ball on confusion. In the meantime, I am doing what I can to prepare my body in case another pregnancy should occur. Planning as if it is going to happen.

I will be glad when this emotional roller coaster comes to a stop. One day grateful, one day sad, one day remorseful. It seems to be getting better. It has all been very confusing as a whole. I don't know what tomorrow will bring, and honestly I wouldn't want to know. It would spoil the surprise. But I just have to have faith that there are good things in store for me.

Tuesday, June 14, 2011

It is with a heavy heart that I write this entry. Despite the fact that my hubby and I were using birth control, and despite the fact that we were done having kids, I found out in April that we conceived. It was a surprise for both of us, as we had been very careful. I kept saying to my hubby, "I don't understand.....how could this have happened?" Well, of course, I know how it happened. But I had been charting and knew when I ovulated. And although I was shocked and surprised, I was also a little giddy. This meant that my reversal surgery worked. Really, worked. Wow.

The initial shock then turned into a scare as I was feeling some pain in my side and knew that ectopic pregnancy could be possible. So off I went for blood tests and an ultrasound. Tests showed hcg levels rising appropriately which led my gyno to believe that it was not a tubal pregnancy. This was exciting until the ultrasound showed that the gestational sac was very small for the date. She told me that she didn't think that this was a viable pregnancy. I was disappointed. I was to come back the following week for one more ultrasound and more blood work. She was concerned that what we were seeing on the ultrasound was a pseudo sac and that there could possibly be something in one of the tubes. She then reassured (sarcasm) me that women who get pregnant after a reversal almost never carry to term. :(

The following week found increasing hcg levels and an ultrasound that showed everything perfect for a 6w1d pregnancy. I was once again excited.

Unfortunately, two weeks later the ultrasound showed no growth. I was told to wait for a miscarriage. On June 8th, 2011, I lost my fifth pregnancy. It hit me as a bigger loss than I expected. I cried for days while my husband held me tightly in his arms, telling me that it wasn't meant to be. I continue to carry such a feeling of remorse that I couldn't have maintained the pregnancy. I felt like it was all my fault because I had the tubal ligation that messed with natures design of my body. And even though I am repaired and feel so much better, I am obviously not well enough to have the hormones to maintain a pregnancy. I know that this could have happened pre TL, when I was younger. I know miscarriage is common. I just have such a sense of regret for ever having the tubal ligation in the first place, that I have tied it together with the lost of this baby. So, now I wait for relief. I know that I will never "get over" this. Time heals all wounds, but this baby, who lived under my heart for a short while will live in my heart forever.

So, going with my gut feeling that it was a boy, I have named him William Marshall. Some people think that it is stupid to name a pregnancy that you only carried for 8 weeks. But it makes me feel better to name him, and some how brings me a little sense of peace to call him by name instead of "the pregnancy". I wasn't even given an ultrasound photo, but I took the above photo when I was told I would most likely miscarry. I wanted at least one photo with him inside of me.

It is my hope that, with prayer, some of my pain will be released. I don't know what the future will bring for me. I assume that we will go back to saying we are done with building our family. I now think of myself as a mom of 5. I think it's fair to count him. He was mine, after all. And technically I did give birth to him, just way too early. It is just very hard thing to go through emotionally, physically, and spiritually. So, blessings to you all, and if you could say a little prayer for me too, it would be appreciated.

Tuesday, May 17, 2011

Here is an article that I wrote for Associated Content. Thought I would share it with everyone.

Over 43 million women in the U.S. today are using contraception, 27% of those rely on surgical sterilization as a permanent form of birth control. Many women are sold on this procedure by their gynecologists, girlfriends, family or are simply pressured into it by a partner than feels strongly about it. Statistics show that half of all women ages 40-44 have been sterilized. Sterilization is pushed primarily toward women who are 35 or older, married, with two or more children, and with incomes that fall below the poverty level. The biggest issue to face women concerning sterilization is not about choice, but rather one of informed consent, and whether or not women are being given all the information they need to make a truly informed decision. Unfortunately, doctors often trivialize the possible complications and thereby make the side effects of tubal ligation invisible.

Brochures on sterilization misrepresent tubal ligation with subtle terms that lessen the severity of the procedure. After all, it’s all about how it is presented. Words can have emotional connotations and the medical community does not want to scare women by using the terminology that might give light to the procedure that is actually occurring. The understatement of bodily information makes tubal ligation seem like a simple contraceptive method. It also makes women believe that it is not as invasive and physically mutilating as the operation actually is. Gynecological texts are not neutral with their language. They accurately explain that the surgery crushes a portion of the tube and kills the tissue that surrounds it. Medical texts discussing electro coagulation describe the fallopian tubes as smoking, swelling, and finally popping when the tube has been damaged enough to tear away a segment. Other texts say that “complete vascular obliteration” must be assured. In other words, cutting off the blood flow to the tissues and surrounding area. Would women agree to surgery if the text read “crushing, smoking, swelling, popping and obliteration”? They might stop to consider the surgery more carefully if they were fully aware that cutting off blood flow to the ovaries is nothing less than female castration.

Most brochures give a brief explanation of reproduction followed by a very basic description of the surgery. Words such as “closed”, “blocked”, “clamped” or “tied”, make it sound like reversing it would be as easy as “unblocking”, “unclamping” and “untying”. Some doctors even promote certain types of tubal ligation as more “reversible” than others. The current worst offender is the Filshie Clip, made by Cooper Surgical, that promotes in their patient literature that, “Reversal of Sterilization is Possible!” Yet these clips work not only by blocking the tubes, but by causing inflammation and scar tissue that could likely make any hope for reversal impossible. Just the discussion of reversal by a doctor, or in a pamphlet makes women disregard the permanence of the procedure and sets up the idea that the operation is semi-permanent.

Sterilization reversal, or tubal reversal, is not a simple procedure, but requires major surgery by someone who is skilled in microsurgical repair of the fallopian tubes. Studies show that over 25% of women who chose sterilization would like to have a reversal. The actual numbers of reversal, however, are about ten percent of all tubal ligations. The lower numbers of tubal reversal reflect both the cost and the difficulty. Even if the reversal is a success, most women still have to use fertility treatments to become pregnant due to reduced ovarian function. A study in 1994 (Hakverdi) showed ovarian deficiency after 12 months in 60% of women, and 30% stopped ovulating all together. So even though tubes can be opened, hormonal deficiencies keep the ovaries from making eggs and generally reduce any possibility of pregnancy.

The seriousness of tubal ligation is also negated in the literature. Laparoscopic sterilization is sold as “quick”, “simple” and a “band aid” operation. After all, if it only requires a band aid on the outside, it must be no big deal right? Depending on the technique used, between 800 and 2,000 women out of every 100,000 will have a major complication at the time of the operation, according to the Guttmacher Institute. But the safety of sterilization is measured by how many women are subsequently admitted to the hospital for complications after the procedure. What gets swept under the rug are women who end up at the gynecologist office complaining of pain, discomfort and menstrual problems. These problems go unrecorded and are often dismissed as minor. Women are left to deal with the effects of their sterilization on their own. They are told the side effects are all in their heads, and are offered birth control pills and anti depressants to “deal with” their symptoms. This silences the collective voices of women’s experiences of pain and discomfort and allows sterilization to be continually seen as a safe and simple procedure.

There are many documented side effects of having a tubal ligation and these have become know collectively as Post Tubal Ligation Syndrome:

These are just the effects that are currently documented. Women suffering from PTLS have a much longer list of symptoms than have not been studied in the medical community. What is concerning is that many of these side effects have been know since 1975, and yet are still discounted by the medical community.

How can women give a truly informed consent when doctors are still perpetuating a mythical account of sterilization as a quick, easy, simple, procedure that enhances sex drive? The pain and discomfort from this procedure is so downplayed that women are often caught off guard, and are left feeling scared, confused and angry that they were not told how much damage was going to be caused to their health.

Sterilization is sold to women by playing on the fear of pregnancy, and encouraging them to alter their bodies to “protect” themselves. They are told that by removing the threat of pregnancy that they will enhance their sex lives. But sterilization does not remove tiny children needing your care, nor does it make up for the exhaustion from working all day, nor will it improve an existing relationship. Many studies have looked at sexual satisfaction in terms of frequency. The implication is that more sex means better sex, but from a woman’s point of view this may not be so. 44% of women experience decreased sexual desire after tubal ligation. (Phillber and Philliber, 1985) Since many women experience heavy and prolonged bleeding, and/or abdominal pain, this can put a serious stop to the uninhibited sex that they were promised. Many women can’t even get help from their doctors until they tell them that the pain and bleeding is ruining their sex life.

If you are considering sterilization for yourself, or discussing it with your partner, please take into consideration the possible ramifications that the surgery will have. The fallopian tubes are not just “tubes” but a hormonal conduit between the ovaries and the uterus that can greatly alter a woman’s physiology if damaged. The potential for mental and psychological side effects are much greater than is explained by doctors and literature. Consider all of your options of reversible contraception before making a body altering decision that could result in irreversible damage.

Welcome To My Blog!

I hope to connect with others who have suffered from PTLS and get the word out that tubal ligations are misrepresented as a safe, simple contraceptive method. It is my hope that the collective voices of women's experience of pain and suffering will eventually change the way we see sterilization. All women deserve to give a true informed consent which lists all of the possible complications that can arrive from this procedure. I also want to let women know how great I feel after having a tubal reversal, and how they can go about finding a doctor to do a reversal if they wish to have more children or simply rid themselves of PTLS.

About Me

I am a Mom of 5 beautiful children, ages 15(g), 13(g), 5(b), 2(g) and the baby-est 1m (g)! I am married to the most wonderful man in the world (Big J) and we have been married for 20 years! I love being a wife and mom.